Well, that was fast--Tough Decisions.

Usually I can come up with some clever introduction to my blog posts, but for this one, I'm kind of at a loss. After my last blog post, I was discharged Saturday afternoon with the IV steroids to be able to continue the steroid taper from the comfort of home, and eventually gradually switch to oral/liquid steroids while also trying to get my weight back up to a healthy level.

Yesterday I was going to a follow up appointment with my primary care doctor, and prior to leaving, I started experiencing the same weird feeling in my chest/arrythmia that I have been feeling intermittently. It came and went, but it was enough to make more really dizzy, nauseous, and short of breath. I got to my doctor's office, and at that point, it seemed to fuel some sort of mast cell reaction. They called 911, and I was back off to the hospital.

When I got here, they gave me the usual anaphylaxis protocol, and also took blood work. Those labs indicated what we already knew and had been seeing in my labs for weeks, severe malnourishment and failure to absorb medications and nutrients. They admitted me back to the ICU Stepdown Unit/PCU Unit that I had been on for the latter part of my last admission, and gave me IV electrolytes overnight.

After speaking with the team here and nutritionists, they decided to start me on TPN, or Total Parenteral Nutrition (LINK). TPN is a cocktail of vitamins, minerals, lipids, fats, etc. that provide complete nutrition via a central line, like the PICC that was placed last week or my port. It takes the GI tract out of the equation in terms of what is getting absorbed, since it bypasses the GI tract entirely, which is why they elected for TPN instead of a nasal or surgical feeding tube. It runs for 12-14 hours a day and provides an entire day's worth of calories and nutrition. While inpatient, they take labs daily, and build a "cocktail" based upon whichever nutritional deficits they are seeing. On an outpatient basis, these labs are usually once a week.

In theory and in the short term, TPN is literally life saving. However, the long term risk profile, risk of complications, and impact on quality of life can be challenging. The current plan is to use TPN for a week + to get my weight up out of the danger zone, and provide a buffer. We suspect that at this point, the autoimmune process that has been ravaging my system is partially fueled by the fact that my body is trying to attack tissues for energy sources. Once we have gotten me out of the danger zone, then we will work on getting me off TPN as soon as humanly possible.

In the mean time, I am supposed to eat as much and as frequently as possible to make sure that my GI tract doesn't take an even more extended hiatus than it already has. I am trying to nibble throughout the day, use supplements like Ensure, etc, again to try to avoid TPN complications and hopefully need it as minimally as possible.

That being said, I was supposed to move into graduate housing at the end of the month to begin my MSW program. In light of recent events, the shift in what our plan going forward is, and the timing of everything, I had to make the extraordinarily difficult decision to defer enrollment in my Master's program for a year.

To be entirely honest, I'm pretty heartbroken. I know grad school will wait for me, and that I need to be focusing on my health, but as I mentioned in my last post, I'm naturally frustrated. I am confident in my team's ability to manage things and to anything and everything necessary to get me back up to speed as soon as possible. I'm also scared of TPN complications, but I know that at this point, I don't have any other choices. While I'm here, we also are going to continue to ween down on the steroids whenever possible while trying to also avoid any more major mast cell episodes.

Once I'm discharged, depending on where we are at with TPN, I"ll either get my port swapped to a double lumen (2 part), or a line called a Hickman, which is similar to the PICC line that they placed in my arm, but in my chest. For TPN, it sometimes is less of an infection risk to use a PICC or Hickman in comparison to a port. My educated guess is that I'll be here at least a few days to a week, but it seems to depend on whether my mast cells cooperate with the agenda. In the mean time, I'm working on snacking, tutoring, coloring, and whatever else is distracting and minimally stressful. b

I also feel the need to apologize for the "Debby Downer" kind of post, but for right now, I think writing everything out is helpful for processing. I hope to have a more positive update soon after they start the TPN overnight.

PICCing and Choosing My Battles

I am just now realizing it has been 2 months since my last blog update-- whoops. Since my last post, I have been working hard on recovering from my last hospitalization back in May, continuing my work as a Family Resource Coach whenever possible (and loving it), and even got in a VERY much needed vacation!

We left at the end of June for Disney World and a Disney Cruise to celebrate my college graduation and my little brother's fifth grade graduation. My doctor was a little reluctant to let me go because I have been having some electrolyte issues (see boring medical update below if interested), but I was SO thankful that I was able to. I have always loved cruising, particularly Disney, so the opportunity to go on an 11 Day trip on an itinerary that is only offered once a year was too great to pass up. This trip was certainly complicated by more health related logistics from previous trips, like IV medications, pumps, coordinating lab timing, etc., but everything fell into place really well. We flew in two days early to have a "buffer" for shipments and lab work before getting on the ship, and time to adjust to the time change and recuperate from traveling. We got on the ship in Port Canaveral, Florida, spend some time at sea, followed by Aruba (checked out coral reefs in a submarine), Martinique (wheeled around the immediate port area), Barbados (stayed at the in-dock shops), San Juan, Puerto Rico (my personal favorite), and Castaway Cay in the Bahamas (I went to a shore side store then hopped back on the boat), which is Disney's private island.

!

The food on the cruise was absolutely amazing, and I certainly would recommend it to anybody with food allergies. Everyone really went above and beyond to find me safe, delicious food so I could indulge like everyone else! Some of my favorites included the top 8 allergen free molten lava cake, a cookies and cream sundae made with Enjoy Life Cookies, Udi's muffins, and Katz brand donuts. I also had the opportunity to meet another young adult with the same conditions as me, which was shocking since the conditions are so rare. I really enjoyed getting to know and spend time with her, and I was also thankful to meet a new friend who "gets it!"

After coming back from the cruise, I also got an opportunity to meet my friend Brittany for the first time in person. Brittany and I have been talking for a couple of years now about our common academic and social interests, in addition to the fact that she is also impacted by the same conditions. We both weren't feeling 110% physically, but we still had an amazing time, and certainly stayed occupied! We figured out how to get into the pool at least up to our waists with central lines, tie dyed hospital blankets to make them more homey, explored the various FroYo shops with allergen friendly options in the area, crafting, and did some baking. The time really flew by, and we are already working on ideas for another meet up!

Now, the health update. Since my last blog post back in May, health wise, things were improving, but very slowly. I have still been having issues with gut/nutrient absorption, and particularly a loss of electrolytes, which can be a problem because a) it makes me feel crummy and b) electrolytes (or a lack there of) can cause cardiac complications as well. After lots of lab work, it appears that there is an autoimmune process (probably a component of the Sjogren's, Hashimoto's whatever) that is going after my kidneys and/or parathyroid that is throwing things off, but we are still waiting for a full interpretation of those results. My GI track seems to be joining the party as well, as my labs look like I am not absorbing my immunosuppressants, which also impacts nutrition. This obviously poses a major issue and complicates treatment.

This past Friday, I had my regularly scheduled IVIG infusion. I was already having some signs of a flare up, but was hoping it would help. This reaction just didn't respond to meds like it should have, so the infusion center sent me to the ER. There, things kind of went down hill, and I ended up in the ICU on an epinephrine drip. They weren't able to get a vein that would hold the additional IV needed for the drip, so it took a whopping 10 tries (which was absolutely miserable) to get an IV that only lasted for a couple of hours. I am still in the ICU, but supposed to be getting moved to the step down unit this evening. I'm a little concerned about how step down will go based upon my last hospitalization in San Diego, but certainly am excited for more privacy and have to give the team here the benefit of the doubt. This is my first time at this hospital close to my parent's new house, and there have been some issues so far (including being served cake with coconut on it), they are trying and have been responsive.

The next morning, they decided to place a PICC line in addition to my port to provide additional reliable IV access without having to dig for veins. I have had them before-- it is a tunneled IV that is placed in my arm and leads to my heart. The current plan is to keep it in place until my single lumen port can be switched to a double, because IVIG, Epinephrine, and another new infused medication the team is hoping to try are not compatible with the Benadryl that is infusing 24/7 through the port. They de-accessed (removed the needle) from my port in the mean time and are using the PICC line instead to reduce the infection risk that would arise from using both the port and PICC at the same time. If my arms heal before they can get me in to place a double lumen  (lines/separate tubes) port instead of my single lumen, then they will pull the PICC line out early. I'm really uncomfortable with the idea of having more than one central line because of the infection risk, but I also understand why it makes sense to keep it in until we have a better back up plan.

What a double lumen port looks like under the skin. My current port only has one clear bubble.

As all hospitalizations are, this stay has been difficult, but even more so because of the length of stay, and honestly, frustration. We know that everything is this autoimmune sh*tstorm, but there really isn't a way to stop it. I am genuinely concerned about what my future holds, and how this disease progression is going to go. There are a whole lot of unknowns and not a whole lot of answers, even from the "best of the best" in the field. I don't know what long term quality of life holds, nor what is going to happen next. It honestly is a horrible position to be in at my age, but at this point, there's also not a whole lot I can do about it. I am sick and tired of being sick and tired, and also frustrated that even when I do everything I am supposed to, things still progress.

This cascade is making me nervous about graduate school. There have been some snags in the process of getting accommodations and field placements sorted out. I am trying to avoid it, but I may need to defer enrollment for a year to get a better handle on things. I have to ultimately make a decision in the next couple of days, so I'll see how things go here, and I'm continuing to speak with disability services to ensure that everything falls into place. On the bright side, my health insurance finally approved my custom ultralight wheelchair. Although we were not able to secure power assist in time, it will be helpful to at least have the chair.

In terms of my hospital jailbreak, it is yet again boiling down to an inability to come off IV steroids. We tried once already to no avail, so we are going to try again tomorrow morning. I have appreciated having some visitors while I have been here, and food that is more edible than what they serve! :P  One new oral medication was started this morning, although I was told it likely won't have much of an effect, and if it does, will take 3-4 months. They may try one other infusion while I am inpatient, which still takes 3-4 weeks to work, but is better than 3-4 months.
We are hoping for discharge later this week, so keep your fingers crossed!

Operation LA or Bust: Success

I am very happy to announce that "Operation LA or Bust" was a success, and that I am resting back at home! I was discharged yesterday late afternoon, and my dad and I got home around dinner time. I'm so relieved to be back in my own house and bed, but each time when I do get discharged, it is unfortunately a reminder of how much strength or energy I've lost during a hospitalization. It's really frustrating to feel that I'm doing so well, and have made so much progress health wise, yet can't get around even in my own house. It almost feels like I've been in some sort of time warp for the past couple of weeks. I have my 22nd birthday to look forward to in a little over a week, although my brain isn't quite there yet.

I'll get my my strength back, the never ending steroid taper will resume, and the moon face will come and go again. But in the mean time, any progress is progress, and I just have to continue to remind myself (again) that slow and steady wins the race.  I've lost a lot of body mass, including muscle, which will take time, physical therapy, and lots of super yummy nutritional shakes to build up :P I'm hoping to try to work for a day or two this week to help get "back in the groove."

Between now and July, I am participating in the virtual "Denim Dash," a 5K for rare disease awareness, something that is obviously quite near and dear to my heart. This race is something I can complete from home-- walking, wheeling, pedaling, whatever. If you are interested in donating or joining the team, sign up here: https://www.crowdrise.com/o/en/campaign/the-mast-cell-crew?utm_campaign=oc&utm_medium=facebook&utm_source=crowdrise

I get food cravings on steroids, but once they're actually in front of me, I'm uninterested. This was an ongoing point of light hearted conversation between my dad and I and the medical team-- "Cookie Mountain." They kept bringing them to me and I decided to try to have some fun with it. 

Good bye and good riddance!

Finals Season, 3 Weeks Epi Free & IVIG Update

I can't believe it is already the end of the semester! These past couple of weeks really flew by. But, I am happy to report that I am officially done with classes for my second to last semester of college! I have 2 finals-- one on Monday, one on Tuesday, then I'm done! All of my other final papers and assignments are turned in, with the exception of one that just needs to be fine tuned. I have also been doing my online tutoring when I am able to as well. To be totally honest, I am still pleasantly surprised with how things have worked out academically this semester (but granted, I did put a LOT of effort in too).

I have been having to "hide" at school a lot this week. We are about 30 miles away from the closest fire, but the air quality is awful. Also, everyone seems to be sick, which is really not an option for me. I don't see or smell smoke at school, but I tried to go without wearing my mask, and boy, did I feel it. Yesterday (Friday) and today (Saturday), I tried to go without the mast on my limited excursions outside, but still was having some trouble. My parents' house has been more affected, as they are pretty close to multiple fires, but luckily, far enough away that nothing was at risk. And I'm sure my brother enjoyed the time off school.

My school is on the semester system, so I will have a month off-- a nice break. Nothing too exciting is planned, but I would like to try to make a trip back up to Northern California at some point during the break.

I double checked my calendar, ant it has been three weeks since I last had to use an EpiPen! That may  not sound like a lot, considering most EpiPen users don't have to use them (or have to rarely), but for me, that is the most time I have gone without having to use it in the last 5-6 months or so. That isn't to say that things haven't been rough physically, and I still have reaction symptoms daily, but the fact that it hasn't escalated to that point is great.

Now, for figuring out why my reactions have not escalated, so I can keep the trend going for as long as possible---- could be a fluke, or could potentially be the IVIG that I received at Children's. I thought I remember my doctor saying that the IVIG would take a few treatments to see if it is working, so I don't know if it is even possible that it is the reason why I haven't had to use the EpiPen. But in the mean time, I'll take it and not question what the source may be.

As I discussed in my last post, getting insurance coverage for IVIG, particularly when it is not being used in a "traditional" way, can be a challenge. This is especially true for me, as I have a separate immunodeficiency which can increase the risk of anaphylaxis to blood products (more info about it here). My body doesn't produce the antibody igA. Since IVIG is a blood product, it contains igA. The type that I received in the hospital either had low or no igA to minimize the likelihood of reaction. My insurance approved IVIG, but not the lower/no igA version-- I have to try the other version first.

To minimize the likelihood of a reaction, they are going to run it very slowly over the course of two days, for 6 hours each day, at an infusion center closer to my parent's house. I will also be given some additional medications before and during the treatment. It was not a particularly pleasant experience last time, even with the low/no igA version, so I am not looking forward to it, but I know that it will help in the long run. I have been told that it is pretty typical for IVIG to be somewhat uncomfortable. And, I always remind myself that it could be a LOT worse. I plan to distract myself by cramming for the GRE, which I am taking the following Monday, and maybe catching up a little bit on my favorite fall TV shows. And maybe binge watching some new shows too :)

I have started submitting grad school apps, which also feels so weird! I still don't know if I want to go right away, or work for a bit first, but I want to keep my options open. I'll start looking for job opportunities in the early Spring as well. Now I should probably stop procrastinating and get back to studying....

The (Metaphorical) Roller Coaster Ride & IVIG

Good afternoon everyone! I'm sorry that it has been quite a while since my last post, things have been busy! Since being discharged a few weeks ago from CHLA, I was working really hard to get things back on track physically, and to regain my strength and stamina. Any time that I am hospitalized, it is a major setback. I have to "start everything over" to a certain extent.

One of the hardest aspects of recovery after a hospitalization for me is weening off of steroids. The steroids make me feel ok and able to function physically, but long term, the effects of toxicity are not pretty. This is why I have been working so hard with my team to find other "steroid sparing" medications-- this is things like the immunosuppressant (CellCept), oral chemotherapy (Gleevec, which I am non longer on), antihistamines including the IV Benadryl pump, etc. Since starting the CellCept, I generally have been doing better, and after the hospitalization about a month ago, I was able to reduce the steroid dose faster than I am typically able to do. Regardless, each time the steroid dose is dramatically increased while in the hospital, it is rough to decrease the dose-- I get swelling, nausea, fatigue, episodes of anaphylaxis, wheezing, etc. It also makes my face swell with chipmunk cheeks, which I am really self conscious of. They are a mixed bag to say the least.

On the "Calm Down" Mom Panel

Last weekend, I went with Molly, the friend who was at CHLA with me, to the FARE (Food Allergy Research & Education) Teen Summit in Newport Beach. Although we felt like we were a little old for some of the programming and a little out of place, it was great to network, get off campus, and take some excursions in Orange County. We went to Downtown Disney (which was NOT a pleasant experience-- we were told that 'people with disabilities stand in line all day'), got to find fun food allergy safe foods at Whole Foods, found some safe chocolate at a local candy shop (putting some links at the bottom for anybody interested in our favorite finds!).

Sunday afternoon *before* things started not going super fantastic. For individuals with POTS like Molly and I, we are supposed to eat a high salt diet, hence the double shaker action.

I think both of us may have slightly overestimated our stamina going into the weekend-- by Sunday, we both felt pretty awful. All day Sunday, I was feeling "off" from my latest steroid reduction. I tried everything I could to avoid the hospital-- breathing treatments, running extra IV fluids, taking extra medication when appropriate, etc. By the evening, I started running out of options-- I had already exhausted all of my at home treatments, and still was showing signs of minimal improvement. I called the clinic, and was told that because it was impacting my airway, I needed to go in immediately.

Molly was also not doing well as the result of complications from their POTS and Ehler-Danlos and associated complications, and my team was reluctant to send me to the hospital closest to school because of how poorly they had treated my case in the past. After speaking with both Molly and myself, and because Molly is trained in using EpiPens, we ultimately decided that it would actually be safer to go back to CHLA, to ensure that they would be equipped to handle my care. Molly was going to need to return there in the morning anyways, so the doctor asked us to go out to CHLA ASAP, and that they would call ahead to be anticipating my case. Although this may sound unusual, given the situation, I was better off getting to a place that was equipped to handle my care.

We loaded into an Uber right away with 9 EpiPens-- we felt horrible for that Uber driver! Luckily we only had to use 2, but it was quite a relief when we actually made it to the hospital. In the ER there, the team also tried everything to be able to send me home, but ultimately, it was back to the PICU. They restarted the epinephrine drip and cranked the steroids back up. Molly was also readmitted, but to a general medical/surgical floor. It was weird both being back there again, but I think that it helped both of us stay positive/optimistic to have each other there, particularly for the experiences that were painful both literally and figuratively. Given how crazy it was that we were trying to make it to CHLA, we have officially (jokingly) named ourselves the "hot mess express" (which Molly modified a graphic novel to document).

The "hot mess express" book

Throughout this week, I have been kind of MIA on social media/blogging just because, as I am sure you can imagine, this is very frustrating. Even when I try all of the right things/try to be proactive, it is not always enough. In order to help channel my energy/focus, I have been working really hard all week on Graduate School Applications and school work. I am still not 100% sure what I want to do after graduation, but I figure that I should at least apply to some different opportunities and programs to keep my options open. I am caught up, but I want to make sure that it stays that way. I think Thanksgiving will also be a good break to make sure that I can get even further ahead. I am all registered for my final semester of college!

I was on the epinephrine drip until Wednesday, so a total of about 3 days. On Tuesday night, the team at CHLA decided to give IVIG a try (part of the reason why it was important to go to a specialty hospital, to be able to try new treatments). IVIG, or intravenous immunoglobulin, is a blood based product made from blood donors, that is a concentrated version of antibodies (this link describes a little more about it). It is typically used for autoimmune disorders or immunodeficiencies. I have an immunodeficiency, but it is not one that IVIG is typically used for. We also suspect that my mast cell may be caused by something autoimmune, but there has not been any confirmation of that yet. While I was inpatient, they decided to give it a shot. Because of my immunodeficiency, I have to receive a special, more highly purified version of IVIG. Since it is a blood product, it is certainly not the most comfortable procedure--- they gave me some premedication ahead of time, like Tylenol, Extra Benadryl, and steroids, but I still had some discomfort. It ran for a little bit over 6 hours.  I am appreciative of the CHLA team for taking me on, even though I technically am a little old for the place, until I get a more solid team established closer to my parents house. There were some rough moments this week, and their staff was extremely supportive, and willing to work with my primary mast cell doctor (who also has gone above and beyond).

It will take a few IVIG treatments to determine if it will have a positive effect, but my mast cell doctor collaborated with the CHLA team, and was really happy that they got this started. The fact that I didn't have a negative reaction is at least encouraging that it did not make anything worse. The next hurdle is insurance-- because this is somewhat of an "off-label use," and because IVIG is so expensive, I may not be able to get it covered. We are trying to get it covered for a treatment every few weeks. Each dose of IVIG requires pulling components of donating blood from a few thousand donors, so if you can donate blood, do it!! It is not any sort of directed donation, especially since it is processed significantly to make the IVIG itself, but having a healthy supply of donor blood helps make the treatment more accessible.

On Thursday night, the primary team that was caring for Molly (GI), ultimately decided that it was best for Molly to head back home to DC and be admitted to the Children's Hospital there first thing Friday morning upon landing. Molly is planning on returning in the Spring for the next semester. Of course, I am bummed that Molly had to head back, but I am glad that they have their home team/family/support network there as well. These experiences have been "unique" to say the least, but I am incredibly thankful for their support and friendship.

I was discharged last night, and I am SO thankful that my family now lives closer by. Beth, my step mom, was able to visit me once earlier in the week and pick me up last night. I am not going to lie, I'm feeling pretty crummy today, but it is good to be home.  It will also be great to see my dad later this afternoon, who should be landing (any minute) from a business trip to India. Cody wrote a story about me for school, which I absolutely LOVED, and he certainly has a talent for writing! I won't post it here since it is his masterpiece, but you should ask him about it if you're curious....

I am planning on staying here for another night, and hopefully heading back to school tomorrow for classes Monday and Tuesday, and then returning for Thanksgiving. If I don't "bounce back" by tomorrow, then worst comes to worse, I go to school Monday for my home health appointment, and then drive back that evening. Thanksgiving weekend should at least give me a good enough break to be back on my feet a little bit more the following week.
For the rest of the weekend, I am planning on continuing to relax/work/write/etc. I have a bit of recovery ahead of me, but I am trying to remain as optimistic as possible that I can bounce back quickly from this episode as well.

On a happier note, if anybody is curious about some of the fun recommendations from the Food Allergy Conference (not anything promotional, just some favorite finds).....


Cookie Dough Do Bites- these were probably our favorite find, chocolate chip cookie dough that you are SUPPOSED to eat raw, and they are top 8 allergen free! They do have one product with coconut in it, but they take precautions to prevent cross contact.

Sugar Rush Sweet Shoppe- cute family owned candy shop in Irvine. They carry Vermont Nut Free, which makes AMAZING skippers (M&Ms that are nut free) and fudge! You can also order directly from Vermont Nut Free, but since I am on the west coast, it is pretty pricey to ship.

Enjoy Life Foods Chocolate Chip Crunchy Mini Cookies- I have always been a fan of Enjoy Life's mini cookies and chocolate chips especially, but I hadn't had these ones before the conference, and they were pretty delicious!

Spokin- a great app for anybody with food allergies/restrictions/intolerances/etc. You are able to review and read reviews on food products, restaurants, bakeries, doctor's offices, etc.

Free!

Sorry it took me a few days to come up with an update! Things were a little bumpy for a bit, and I was not feeling great to work on writing a post. Between my last post and yesterday, the PICU team at CHLA worked on getting me off the epinephrine (adrenaline) drip, and off of IV steroids, so I could get back to school as soon as possible. It took a couple of trials and errors to get the drip off, but after a few days, it started really messing with my blood pressure overnight on Monday night. They turned off the drip early Monday morning, and yesterday switched me to oral steroids.

Once I hit the 12 hour mark off the epinephrine drip without requiring any additional EpiPens, and they were able to get my blood pressure down, they let me go home last night! For the most part, my meds are similar. Unfortunately, they had to give me a HUGE steroid blast to keep me from swelling up, which, as I have talked about before, is not fun. The side effects are unpleasant, and the long term effects aren't great. The doctors made me a new taper schedule, which we are hoping will help me reduce the dosage faster than before. They also placed a patch on my chest to help control my heart rate better. I'm still on the continuous Benadryl pump, so nothing new there.

Since I was there for about 5 days, and on epinephrine for most of that, it did dramatically impact my strength again. It is going to take a few weeks to get back to some sort of baseline. In the mean time, I am resting at my parent's home. Although any hospitalization is super unpleasant, this experience was significantly better than my previous experiences. The team at CHLA was absolutely incredible. They went above and beyond to make sure that I was as comfortable as possible given the situation, listen to me, and "cover all of the bases." They had a plan, and stuck to it. Everyone took a genuine interest in helping me feel better and back on track. They also knew that I REALLY wanted to be discharged, and made sure that I had anything and everything I needed to do so. Having my dad and step mom close by was also immensely helpful, and I am also super appreciative of everyone who came to keep me company for a bit!

Although I'm not a "kid" anymore, I honestly felt like their support programs helped-- they kept me busy, distracted, and feeling semi normal-ish. They brought me things to keep me busy since I wasn't allowed to leave the PICU, therapy dogs who came by usually once a day, and even silly things like making sure the blinds were open to get some natural light. Having Molly there was also quite an experience-- I am lucky to have such an amazing friend. Even though I kind of ended up there by coincidence, without Molly, I would not have been "in the right place at the right time," and likely would have ended up in a much worse situation than I was.

Molly is still at CHLA, and we are working on an elaborate helicopter escape plan :) In the mean time, here is a link to send a (free) halloween card to CHLA-- they will be distributing them on Halloween, and for every card submitted, they get a $1 donation! I do NOT want to land myself back there, but I can certainly say that they are amazing people doing amazing things.

https://secure1.chla.org/site/SPageNavigator/Halloween2017.html?utm_source=in1&utm_medium=social&utm_campaign=hall17&s_src=hall17in1

I am hoping to head back to school this weekend, and the doctors said I can start going to classes again next week, taking it easy as need be. Once I am back on track, I'll be able to actually investigate the whole grad school situation a bit more, but until then, back to sleep for me~

Representing Team Taylor @ CHLA.

Keep On Keeping On.....

Wow, I am already at the halfway point of fall semester-- fall break! The time has honestly flown by. I have enjoyed being busier, and the intellectual stimulation, but not going to lie, there have been some hiccups and challenges. Health wise, not much has changed-- still on the immunosuppressants, the Benadryl pump, and all other meds as usual. We are still continuing to try to reduce the steroids. I have made progress, but I am still at 2-3 times what would be considered  a "replacement dose" of steroids, which is what my body should naturally make. My "moon face" is starting to come down a bit,. There are good days, bad days, and ok days. Some days I feel ok, other days I feel like I it hurts to just move, etc.

In addition, about two weeks ago, the Mast Cell community lost a huge member of the team, who was truly a friend to all-- Taylor Nearon. Taylor was 20, and had the same diagnoses as me. She was really helpful for me when I started the CDI (Benadryl pump), and always seemed to know the right thing to say. Taylor fought a long and hard battle, and passed away peacefully after complications. It was so hard to hear about Taylor's passing, and it is scary, but I am comforted knowing that she is no longer in pain. Her legacy and how so many people are affected by her passing is a testament to her character and strength. She founded a non profit to help individuals with Mast Cell Activation and raise awareness. My thoughts and prayers are with her family and close friends. A great article about her, appropriately titled The Battle Ends, the Story Continues: The Battle Ends, the Story Continues

October is National Disability and Dysautonomia Awareness Months. Dysautonomia is dysfunction of the Autonomic Nervous System, which is largely responsible for the "fight or flight" response, and may of the body's most basic regulatory symptoms. There are many different types of dysautonomia, Postural Orthostatic Tachycardia, or POTS, affects me, and is common in patients with MCAS and EDS. For me, this leads to fatigue, a high heart rate, dizziness, anxiety, blood pressure changes, blood pooling, etc. I use additional fluids and salt to help control the condition non pharmacologically, in addition to meds. More information about POTS is available on my blog under the "Links" tab. In honor of National Dysautonomia Awareness Month, I, alongside a club I recently founded, Spoonie Alliance, painted a mural on a "free wall" at my school, which is essentially a wall that you can paint on at any time without any sort of formal clearance/approval process.

I am looking forward to more "Spoonie Alliance" events in the future, and creating a more accessible community at the Claremont Colleges to help decrease stigma and increase cohesion amongst students with disabilities or differences. The term "spoonies" relies to an idea that I *think* I discussed in other posts, known as Spoon Theory. The idea behind it is that individuals with a chronic illness, disability or difference have a limited number of spoons, which is essentially a metaphor for energy. Although most people have a lot of spoons, and can "regenerate" them by resting or doing something relaxing, "spoonies" run out of spoons faster, and have difficulty replenishing them. Tasks that may seem simple could be really hard for a spoonie. Here is a link discussing Spoon Theory: Spoon Theory- But You Don't Look Sick

And a link to my Pinterest board about Spoon Theory and Chronic Illnesses for comedic relief: Pinterest

Tying this into the idea of National Disability Awareness Month,  I would encourage everyone to be aware of how you go about everyday tasks, and how others may experience difficulties going through these seemingly "easy" tasks. I find that for me personally, it is some of the easiest things the most people take for granted that end up being the hardest or more exhausting. A great way that you can help a friend or loved one is to ask how you can help-- often times it is the most trivial things that may be the hardest to ask for help with, or the things we might be most embarrassed to ask about.

Another important note is on the mural we painted, that not all disabilities are visible-- although my disability has become more visible, as I have discussed in other posts, there are often situations in which people don't understand that things may be more difficult and/or inaccessible. Just because someone doesn't look sick doesn't mean they aren't-- I am always reluctant to use my handicap placard because people will say things, or sit down in public places when I am really dizzy.

I am starting to become more ok with these things, but it is a journey. Since Taylor's passing, and as thoughts about grad school and life after college come up, I have been feeling somewhat apprehensive. A lot of the things I imagined myself doing before-- teaching, working as a social worker-- are simply not suitable environments for someone who is immunocompromised, and I don't know how much and in what capacity I will be able to work. Sure, I could stay totally stable where I am, improve, or decline but nobody really knows. There is no timeline, no sense of stability. There aren't any great treatments for any of these conditions, and treatment is a lot of guesswork, trial and error.

A common misconception (of the general public) is that the CDI, or Continuous Benadryl Infusion that I am on, is a "cure"-- although it has allowed me to not live in the hospital and become more functional, I still experience symptoms on a daily/nearly constant basis. It was only done as a life saving measure to prevent me from living my life in the hospital (for those of you who are newer followers, I began this treatment after exhausting most other options, and being hospitalized for about 2 weeks with no improvement). I did know this going into it, and I have discussed this in previous blog posts. Depending on the day, it can range from itching or nausea, all the way to deep bone and muscle pain, fatigue, dizziness/syncope, swelling, cramping, yada yada. I have a pretty high tolerance threshold at this point. I do still have to use an EpiPen one to two times a week. Some days my symptoms impact my functioning more than others. I am not trying to discount that there has been a lot of improvement in my condition over the past 6-10 months. There is NO way I would have been able to do anything that I am doing right now a few months ago. It is absolutely doing it's job. I am having more "better" days--but, I still wish there was a magic wand.

It's frustrating. And as many individuals with chronic illnesses know, it is hard to feel unpredictable, and to not know how many "spoons" I will have 20 minutes from now, let alone 2 weeks from now, or 2 years from now. And it can change any minute--- one minute I feel ok, and the next I feel absolutely awful. But in those situations, I just have to take a step back, and try to take care of my needs. It's a learning process, and is going to take time, as well as physical and emotional healing. I have to become more ok with not being ok. One of my doctors calls me a "super coper"-- I try really hard to hide when I am not feeling great, I know all the coping mechanisms, and all the distraction techniques. But, its not a sustainable way to live.

Academically, things are going well-- I am doing well in my classes, and having no problems keeping up. Still debating the whole grad school/going right into the field thing-- I think I am going to just have to evaluate things as they go, and reassess.

Tonight, I did some baking to try to do some "self care." I am trying to find things that I enjoy, which honestly has been harder than I had hoped. Our Fall Break means that I have this Monday and Tuesday off school, so I am enjoying a long weekend at my dad and step mom's house. Until then, I am hoping for some good sleep, maybe more baking and craftsy stuff, and a little R&R. The house still smells like chocolate meringue cookies, so maybe I will just have to make them again :) Also sending my love to all who have been affected by some of the tragic occurrences the past few weeks- Vegas, the wildfires, earthquakes, etc.

I also have included some fun graphics below about Dysautonomia for Dysautonomia Awareness Month:

Follow Ups and New Routines

It has already been three full weeks of classes! The time has simply flown by. I am already rapidly approaching my first sets of midterms and papers. I am currently enrolled in 4.5 credits (in which 4 is a full course load)-- Psychology and Law, its corresponding lab course, Bioethics, Gender Theory, and Sociology of Health and Medicine. Although all of my classes have been really interesting thus far, the bioethics and sociology of health and medicine courses have been particularly interesting wince they are relatable to so many of my day to day experiences.

I am getting into a new routine with class, homework, studying, and (attempting) to take care of my health. Unfortunately, I did have my first ER trip for a reaction last week. Luckily, introducing myself to the fire department paid off, and they knew what to do. I had gotten stressed out because my ride from one class to another was late, so I tried to fast walk to my next course during my difficult time in the morning. Eventually I was picked up, and I tried to go get a water before going to my class because I noticed I was dizzy, but I passed out, and then had an anaphylaxis episode. I was armed with a note from my mast cell specialist, so once everything stabilized, I persuaded them to release me, and I pushed myself to go to class later in the evening.

I have classes Mondays through Thursdays, with Mondays and Wednesdays being my longest days. By the time Thursday mid day comes around, I am totally wiped out. I have been able to go home every other weekend or so, which has been amazing, and I was able to go home for my dad's birthday. It has been great having them close by, and its helpful to know that my family is there if I need them.

Socially, things have improved, but still have been difficult. I just don't have the stamina like I used to, and it has been harder to distract myself. I am not finding as much enjoyment in some of the things that I used to do. Nevertheless, I am incredibly thankful for those friends who have reached out to me and stood by me in this transition, and I have been trying to reach out as well, which seems to have been helpful.

Last weekend, before going home for the weekend and my dad's birthday, I went to San Diego for a follow up appointment with my mast cell specialist at Scripps Clinic.  I was able to go down to San Diego a little early, and check out a top 10 allergen free bakery (which was SUPER cool and delicious), and see a friend who has the same conditions as me, and visit her at her school for her birthday. My dad met me there, and we had my appointment, then drove home. Magically, after my ER trip, the rejection for the oral chemo was reversed (although that may be unrelated). However, because I had already kind of went through the withdrawal from it, and we know that I was allergic to some of the excipients (other ingredients) in the medication, and it is still a form of chemo, we are trying to avoid going back on it. Instead, since the immunosuppressant is showing signs that it may be working, we are doubling that dose, and may double it again. We also adjusted some of the settings on the Benadryl pump to see if it provides a more complete coverage of my symptoms. Unfortunately, everybody is kind of "flying blind" in our situation, but I was extremely relieved that he was not giving up on me (something I had been worried about). I am still using EpiPens at least every few days, which is not ideal, but if it keeps me out of the hospital, then I will do what I can.

Not going to lie, I am worried about the immunosuppressants and school. From the steroids that I am still on (although we are going to try to ween it down very slowly) and the immnosupressants, as well as my existing immunodeficiency, I CAN NOT get sick. If I do, it likely would crash my adrenal system, and require hospitalization, which comes with its own host of infection risks, and I don't trust the hospital here. I am trying to do what I can in terms of hand washing, cleaning off surfaces, etc, but I am on a college campus after all, so I can only do what I can do. I am working with some other students to start a club called "Spoonie Alliance" which will be a highly accessible/fun event group that plans substance free alternative events on some weekend evenings.

My POTS (postural orthostatic tachycardia) symptoms have been particularly debilitating lately. Even with following all of the doctor's recommendations such as a high salt diet, fluids, etc, I can't stand in line for more than a couple of minutes without feeling faint. If I walk around, I am ok, because my circulation keeps going, but standing in lines is a no-go. I am trying to exercise and do my physical therapy to help as well, but it doesn't seem to be making much of a difference there. So at the dining halls, in addition to the food allergy request, I sometimes ask for help with getting food from the back, since it is safer with the food allergy anyways, and people have been pretty accommodating. Since I am closer to Scripps Clinic now than Stanford, I have an appointment with another POTS specialist at Scripps the next time I follow up with the mast cell doctor to make sure that we have all the bases covered.

Over the next few weeks, as the stress levels continue to climb, I keep reminding myself that I need to implement  more self care, but naturally, that is easier said than done. Leaving the weekends to kind of "crash" ensures that I can make it through my Monday through Thursday classes. I only missed one class so far (when I was in the ER), so I am staying caught up on my work, and trying to stay ahead of the game as much as possible, but at the same time, I do need to occasionally let myself take a break, because I know that if I don't tone things down, I am going to end up crashing again. I suppose it is just difficult seeing everyone around me with higher levels of energy, going out, exercising more, and doing other things that are beyond my capabilities, and that leads to guilt. I try to just redirect that energy towards being productive. My normal is so different than others-- heck, in my class the other day, I started having shock symptoms, went outside, did the epipen, and came back in. Again, probably not the best self care, but I got through it. It is hard to convince myself to engage in more self care when I know I got through it, but at the same time, I have to be more aware of my needs in the first place to avoid these situations.

The immunosuppressant was increased today, so I am crossing my fingers and toes that it kicks into full gear sooner rather than later. I was hoping to travel with my family after graduation in May, but if things continue at this rate, the doctor said it was unlikely. But, it is a goal (in addition to actually graduating itself). I appreciate the love and support, and ask that you please continue to bear with me!

Losing Invisibility

Good afternoon everybody! No real updates at the moment. I started classes, and for my bioethics class, I wrote this short reflection, which I actually felt proud of, so I figured I would share it here.

As someone who has long identified as having an invisible disability, and having served as an effective self-advocate in the past, I did not anticipate that returning to college with an “invisible disability gone visible” would be so difficult. Although I have worked to try to keep my identity separate from my disabilities, some of my physical and cognitive limitations end up shaping everything I do, both consciously and unconsciously. For example, as a result of my difficulties with auditory processing, I tend to take notes on the computer, which sometimes has differentiated me from other students, particularly in courses that don’t allow computers. It is something that I know works best for my style of learning, and my “go-to” notetaking method. But outside of classroom situations, my auditory processing problems generally remained invisible, as well as my physical health conditions.

            However, as my Mast Cell Activation Syndrome has progressed, and now require around the clock intravenous treatments, my disability is not only visible, but pronounced. Most individuals, especially twenty-one year olds, don’t walk around with a pump that clicks every two minutes. Nor do they have facial rounding, bruising, tremors, and all of the other side effects which come as side effects of the steroids and other medications that I am on. Initially, this took some getting used to even around the house and my family, but returning to school, I am more conscious than ever of the effects of my condition and its associated treatments. I am constantly aware that I am different from “the norm,” and not able bodied. Although it is rare for this to be stated to me explicitly, the stares, pity glances, and silence that consumes a room when I walk in is telling enough.

            I suppose that I am more conscious of other individuals’ behavior changes because my disability was one somewhat invisible. I was fortunate enough to be “invisibly disabled” for most of my life, up until getting sick in college. Reflecting upon this idea, I wonder how individuals who are visibly disabled from birth cope with others noticing their differences. Do they also feel self-conscious about it constantly, or is that something that is “the norm” for them? I believe that young women in particular suffer the most from the problems associated with being “invisibly disabled.” Something that I have experienced personally and seen in many of my peers is the assumption that any physical symptoms is psychosomatic until proven otherwise. I do believe that there is a deep connection between the mind and the body, which creates a constant feedback loop, but it is important to differentiate correlation and causation. Just because someone has an anxiety disorder doesn’t mean that their pain or nausea is simply from nerves, and can be cured from “just calming down.” Although anxiety may be a contributing element of their physical symptoms (and sometimes the cause of it), doesn’t mean that one should assume that it is psychological.

            A saying that I have heard from others in the chronically ill community (which is particularly strong online), is that doctors are told in medical school a quote coined by Dr. Theodore Woodward, “when you hear you hear hoof beats, think of horses, not Zebras” (1940). However, from someone who is a zebra, and was labeled as a horse for most of my life, I think that it is critical for medical professionals to think of horses, but also keep in mind that zebras are out there.

References

Sanchez, A. (2012, November 13). When you hear hoofbeats, don't think zebras. Retrieved from

https://www.digitalistmag.com/lob/sales-marketing/2012/12/06/when-you-hear-hoofbeats-dont-think-zebras-022309